Down the road
In the long run, some patients will have learning difficulties, growth impairments, or long-lasting problems with their immune systems, and 95 percent of the time, they will be sterile as adults. Understanding and agreeing to these potential lifelong problems makes the consent process daunting for families. As Green recalls, "The first time, my parents signed all the consent forms, but the second time I was an adult and had to sign them myself. It was very scary to think about all the things that could happen during the transplant and afterwards."
Eva Guinan, MD, and Gordon Freeman, PhD, are working to improve the donor-matching options for stem cell transplant patients and their relatives.
Follow-up care in the Jimmy Fund Clinic is critical for days, weeks, even years after the transplant. "It's like going to a day hospital," says Callaway. "We keep close tabs on our outpatients, checking their organ function, blood components, and antibodies. We treat and prevent infections, and refer to specialists as needed. Overall, we pay attention to how the whole body is recovering, and monitor the patient's psychosocial well-being."
Clinicians agree that outcomes are difficult to measure because each case is so individual. Every child's future rests on a complex interplay of factors, such as the type and severity of disease, the kind of stem cells received, and, in the case of allogeneic transplants, the precision of the match.
One outcome is certain. Just as the fragile new cells begin to grow in each child, so do friendships deepen among patients, families, and staff members. "This work gives you a chance to develop long-term relationships," Callaway reflects. "I am struck by how grateful and graceful these families are."
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